| | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | OP  "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Should I call his RO & tell him how I feel & that we ae looking at a 2nd opinion?
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Yes...yes...yes....get another opinion.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 |
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jeana,
Help me,
Are you saying that he still has 1 or maybe 2 nodes that are still there?
Has anyone taken a needle biopsy to determine if it's still cancerous?
The nodes can be taken post Tx as he can have a bilateral neck dissection.
The reason that they are saying no more radiation and fingers crossed is perhaps old school as more than a few on this site have said they have had the rad twice and one person just said he had it 3 times and is still among us.
I got multiple opinions so don't be afraid to seek others and don't wait to long to decide but you first need to know if the cancer is still there.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | His next scans will be in 2 months. The doctor 2 weeks ago mentioned the lymph nodes cut out. Thats fine. It is the tumour in his mouth [tonsil, jaw, under tongue, soft palate] that we were told was inoperable. At the begining, they said they wouldn't operate because they weren't confident they could get all of the tumour. I stupidly thought they would shrink it with the chemo & rads then reassess it. Being told it is inoperable puts a whole new picture in our heads. Being told 'no plan B' makes it worse. David we were told the lymph nodes held cancerous cells but the tumour was inside his mouth. I serously need to speak with someone, I think it's doing my head in more than Rod's...Im so sad 
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | PS...no they haven't done any more biopsys yet. Waiting for Rod to go to sleep before calling the hospital. I feel like a mushroom.....
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I know how you feel, Jeanna. My husband kept getting bad news after bad news also. Do you have family or friends to talk to? maybe someone where your partner is being treated can suggest a support group for you. It is a lonely time as I'm sure you don't want to voice all your fellings to him. Let me know if i can help-you can send me a pm and I will give you my number.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jeana,
Still confused...he finished Tx end of July 09 and you are saying that he stills has swollen nodes AND the tumor in his jaw and soft palate?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | OP "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Yes David, the nodes are still swollen, more specifically the larger one. It HAS come down [in height] but the dimentions are they same. The tumour - well, they have seen something, but covered it over by saying it could be 'debris'. I called & spoke with the registrar we saw the other day [not Rod's oncoligist], the registrar said that after the scans they will make decisions on what they could do next. He said if the nodes don't grow any bigger, they won't do a biopsy. I just told him how we felt when leaving the hospital on Tuesday, and that there didn't seem much hope. 'Bloody awful feeling'. I felt a little better after speaking with him, guess there is no point thinking about it until it happens, but that is damn hard. He said their objective with the treatment was to 'cure' him, suppose that's the same for everyone.
Suemarie, thankyou for the offer of an ear...could be taking you up on that in the future!! Saw my councellor at work today, cried for 40mins non stop I reckon....going to bed now...
J
xxx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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